authors: shoshanna sofaer, drph. mary jean schumann, dnp ...4aa949/globalassets/... · 8....

Authors: Shoshanna Sofaer, DrPH.

Mary Jean Schumann, DNP, MBA, RN, CPNP, FAAN

This White Paper was prepared for the Nursing Alliance for Quality Care

with grant support from the Agency for Healthcare Research and Quality (AHRQ) to the George Washington University School of Nursing.

Approved March 15, 2013

Nursing Alliance for Quality Care 2

FOREWORD

The Nursing Alliance for Quality Care (NAQC), composed of twenty-two national

nursing organizations and consumer advocacy groups, is committed to improving the

quality and safety of health care for all Americans. It believes that (1) the active

engagement of patients, families and others is essential to improving quality and reducing

medical errors and harm to patients; and that (2) nurses at all levels of education and

across all health care settings must play a central role in fostering successful patient and

family engagement. The following White Paper emerging from the national consensus

process identified below describes how imperative it is for the nursing profession and

NAQC to focus on patient engagement.

This document, initially drafted by a national expert on patient engagement, was

honed through a national consensus process supported in part by grant 1R13 HS21600-01

from the Agency for Healthcare Research and Quality (AHRQ)*. This consensus process

included:

1) A Panel of Experts which met to review the first draft and to dialogue about the

content of the second draft. Experts were drawn from across the country

representing the best thinking on patient engagement from a theoretical framework

as well as from a consumer view, nursing view or other provider perspective.

Nurses representing advanced practice, senior nursing leadership, education,

research and regulation as well as nurses at the bedside spoke to multiple settings

and populations in need of improved care and successful engagement. (See

Appendix for attributions).

2) A national consensus conference that was planned and implemented, featuring

national experts on patient engagement, to raise the level of knowledge about

nursing’s contributions to patient engagement. A central feature of this two-day

conference was conducting listening sessions to elicit feedback from every attendee

and expert speaker regarding the content of the White Paper, which was then

incorporated into a third draft.

3) Reviews of all drafts with concomitant feedback by members of the Nursing Alliance

for Quality Care, its Board of Directors, and the NAQC faculty and staff team.

4) Preparation and review of final drafts which were disseminated to the NAQC

member organizations and the NAQC Board of Directors for approval and support.


5) Wide dissemination of the final document within the national nursing community to

enlist endorsement of its strategic plan and support for implementation.

6) Dissemination of the final document widely to other health care entities, health care

professional disciplines, consumer groups and stakeholder groups to share

strategies.

While it will be critical to “divide the work” and thus “conquer,” it will also be

important for those working on this very important initiative to be in regular and in-depth

communication. Key shared messages will be needed. NAQC and others will need to

track progress, not only within individual strategic areas, but across them. It is essential

that the profession present a clear and united front in completing this transformational

work.

The Nursing Alliance for Quality Care, representing both nurses and consumers,

urges you to commit to this vision of the future, through active participation in advancing

the profession’s strategic agenda and action steps identified in the White Paper and

ultimately by greatly enhancing nurses’ contributions to fostering patient engagement

successfully.

*Funding for this conference was made possible [in part] by grant 1R13 HS21600-01 from the Agency for Healthcare Research and Quality (AHRQ). The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.


CONTENTS

FOREWORD ................................................................................................................................. 2

I. INTRODUCTION & DEFINITION ................................................................................................. 5

II. NAQC GUIDING PRINCIPLES FOR PATIENT ENGAGEMENT ........................................................ 6

III. WHY PATIENT ENGAGEMENT IS NURSING’S PRIORITY ............................................................ 7

IV. WHAT IS PATIENT ENGAGEMENT? ......................................................................................... 9 A. Making the Case for this Definition of Patient Engagement ............................................................... 9 B. The Logic Model for Developing and Achieving Outcomes of Patient Engagement .......................... 12 C. Acquiring Patient Engagement Behaviors and Shared Decision-‐making Skills .................................. 13

IV. A MODEL FOR ENHANCING THE CONTRIBUTIONS OF NURSES TO FOSTERING SUCCESSFUL ENGAGEMENT ........................................................................................................................... 14

A. Achievement of Conditions by Nurses that will Foster Successful Engagement ................................ 14 B. Logic Model for Fostering Successful Engagement ........................................................................... 15

V. FROM MODEL TO ROADMAP: BUILDING A STRATEGIC PLAN TO MAXIMIZE NURSING’S CONTRIBUTION TO PATIENT ENGAGEMENT .............................................................................. 17

A. Ensuring that all nursing education emphasizes patient engagement .............................................. 17 B. Amplifying the professional standing of nurses as champions for patient engagement ................... 18 C. Strengthening support for nurses as advocates in the care environments of patients ...................... 19 D. Aligning incentives to encourage patient engagement .................................................................... 20 E. Enforcing regulatory expectations and standards that support patient engagement principles in practice ............................................................................................................................................... 21 F. Intensifying efforts to conduct and disseminate research on patient engagement ........................... 22

VI. CLOSING THE DEAL ............................................................................................................... 23

REFERENCES .............................................................................................................................. 25

ATTRIBUTIONS and ACKNOWLEDGEMENTS .............................................................................. 27


I. INTRODUCTION & DEFINITION “Patient engagement is the involvement in their own care by individuals

(and others they designate to engage on their behalf), with the goal that they make competent, well-informed decisions about their health and health care and take

action to support those decisions.”

Based on the discussion detailed in this White Paper, the NAQC proposed the

above definition to facilitate discourse regarding nursing’s role in fostering engagement

and how to further advance the achievement of patient and family engagement in all health

care settings.

Patient engagement is a key element and even a necessary condition for the

achievement of patient-centered care (Gerteis, Edgman-Levitan, Daley and Delbanco,

Eds., 1993; Institute of Medicine, 2001). In 2008, the National Priorities Partnership (NPP)

of the National Quality Forum (NQF) identified patient-centered care that encompasses full

engagement of patients and their families in shared decision-making processes as one of

its six key priorities (National Priorities Partnership, 2008). NPP recommended its inclusion

as a priority of the National Quality Strategy (NQS) (U.S. Department of Health and Human

Services, 2011). The Center for Medicare & Medicaid Innovation (CMMI) has created a

national Partnership for Patients (P4P) which places a strong emphasis on patient

engagement and along with the NPP drives implementation of the priority. The American

Academy of Nursing, as part of its efforts to identify the need to measure the impact of

nursing, has published an Action Brief (Pelletier and Stickler, 2013) on measurement of

patient engagement. Nurses’ daily experiences include working with patients and families

who have often fared poorly because patients’ concerns, preferences and knowledge have

not been valued.

The purposes of this paper are to propose a strategic plan that encourages nurses’

support of patient engagement, to delineate the empirical case for the proposed strategic

plan, and to secure the participation of organizations, nurses and stakeholders in

implementation of the plan.


II. NAQC GUIDING PRINCIPLES FOR PATIENT ENGAGEMENT

The NAQC, which includes both nursing and patient/consumer representatives, has

created a set of Guiding Principles to support nurses’ efforts to foster patient engagement.

These principles provide a basis for the strategic plan and actions that NAQC

organizations and others will use to improve nursing’s contributions to fostering effective

engagement of consumers across health care settings.

Guiding Principles for Patient Engagement

Patient engagement is a critical cornerstone of patient safety and quality. NAQC has grounded its approach to this topic by recognizing the primary importance of relationships between engaged patients and families and their clinicians, including but not limited to nurses. The following are principal assumptions that guide NAQC in addressing care that is patient-centered. 1. There must be an active partnership among patients, their families, and the providers of

their healthcare. 2. Patients are the best and ultimate source of information about their health status and

retain the right to make their own decisions about care. 3. In this relationship, there are shared responsibilities and accountabilities among the

patient, the family, and clinicians that make it effective. 4. While embracing partnerships, clinicians must nevertheless respect the boundaries of

privacy, competent decision making, and ethical behavior in all their encounters and transactions with patients and families. These boundaries protect recipients as well as providers of care. This relationship is grounded in confidentiality, where the patient defines the scope of the confidentiality.

5. This relationship is grounded in an appreciation of patient’s rights and expands on the rights to include mutuality. Mutuality includes sharing of information, creation of consensus, and shared decision making.

6. Clinicians must recognize that the extent to which patients and family members are able to engage or choose to engage may vary greatly based on individual circumstances, cultural beliefs and other factors.

7. Advocacy for patients who are unable to participate fully is a fundamental nursing role. Patient advocacy is the demonstration of how all of the components of the relationship fit together.

8. Acknowledgment and appreciation of culturally, racially or ethnically diverse backgrounds is an essential part of the engagement process.

9. Health care literacy and linguistically appropriate interactions are essential for patient, family, and clinicians to understand the components of patient engagement. Providers must maintain awareness of the language needs and health care literacy level of the patient and family and respond accordingly.


III. WHY PATIENT ENGAGEMENT IS NURSING’S PRIORITY

The current health care environment is complex, fragmented, overextended and

inconsistent in the quality of care it provides. Even in the face of significant innovations in

health care services and technology, the reality is that health care delivery, whether in

inpatient or primary care settings, is fraught with medical errors, safety concerns, and

failures to provide quality. While dramatic improvements in access to health coverage

through the Affordable Care Act are imminent, this will occur at a time when the system

unintentionally does harm to many it intends to cure. Such problems were documented by

the Institute of Medicine more than a decade ago. Despite national efforts by hundreds of

organizations and institutions, minimal progress has been made (Landrigan, 2010),

prompting recent national initiatives by the national Partnership for Patients to reduce harm

to patients by 40% and reduce all hospital readmissions by 20%, two agendas embraced

by the more than 5000 healthcare institutions and entities participating (US Department of

Health and Human Services, 2012).

So why does NAQC choose to focus on patient engagement as a priority? From

the perspectives of patients and family members, and from the views of health care

organizations and professionals, preventing harm and reducing readmissions both appear

doable through more complete and effective engagement of patients, regardless of setting.

Certainly patients and families cannot be expected to fix the health care system. But their

voices, their growth in making more knowledgeable well-informed health decisions, and

the certainty that they will have their values, preferences and choices heard can positively

impact a health care system willing to listen and learn. Nurses see all too frequently the

examples of medication errors where patients and families questioned the administration

of a medication to no avail, and the tragedies of families and patients who insisted to deaf

ears that something was seriously wrong, only to have the family member suffer grievous

consequences due to the failure of a health care team to respond appropriately. Patients

and families can and do speak up, but their voices have not proved to be sufficient to

protect themselves. It is up to health care professionals and health systems to listen and


respond appropriately.

Nurses are the professionals who are the eyes and ears of the health care system.

Nurses, as the most trusted of all professionals (Gallup, 2012) are considered by patients

to be the safety net. Patients depend on their nurses to speak up within the system, to the

physician and others on the team, by advocating that a “time out” occur to prevent a wrong

site surgery, by coordinating care upon discharge (Jencks, Williams and Coleman, 2009),

by insisting that the right medications be ordered or by taking the time to validate what the

departing physician really meant when s/he ordered a procedure or delivered a diagnosis.

Often patients are not given information on test/treatment benefits, risks and options that

would make “patient consent” authentic. Health professionals’ expressed concerns about

this are reflected in the “Choosing Wisely” campaign of the American Board of Internal

Medicine and its partners (Cassel and Quest, 2012). Nursing as a profession has an

ethical obligation to support patients and families being successfully engaged and heard in

every health transaction. Nurses at all levels, in all care settings and in their work and

lives in communities, support engagement by all consumers of health care. There are 3

million nurses in the United States, on average one for every 100 individuals.

Neighborhoods, faith-based communities, schools and others rely on their knowledge and

often their volunteer services.

Nurses can be strong enough to question the appropriateness of a medication order

that flies in the face of the patient’s condition. Yet we know that a variety of factors have

reduced nurses’ willingness and effectiveness to be this strong voice on behalf of patients

who depend on them. This document details a set of strategies that will support every

nurse as an advocate, will educate each nurse regarding techniques that foster well-

informed decision-making by patients and families, and will demand that the health care

system stop, listen, translate effectively, and respond appropriately to keep patients safe

from harm due to medical error or insufficiently responsive health care professionals.

Engagement, including informed decision-making that is supported by strong nurse

advocates, can and should be the rule rather than the exception in every health care


encounter. Regardless of whether the nurse’s role is to provide direct care as a primary

care provider or at the bedside, to lead others in the provision of that care, or to establish

policy, nurses are positioned to do what it takes to make it easy and clearly beneficial for

patients and families to engage. Nursing leaders create the context in which patient and

family engagement will be successful.

IV. WHAT IS PATIENT ENGAGEMENT?

A. Making the Case for this Definition of Patient Engagement

The term “patient enagement” is relatively new, but its use has spread rapidly. A

recent search in PUBMED indicates that prior to the year 2000, 504 citations for the term

“patient engagement” can be found, while a search to the present day generates 4,058

citations. The growth in use of the term appears to be related, as a kind of “lagging

indicator” to the use of the term patient-centered care (Gerteis et al., 1993, Institute of

Medicine, 2001). Unfortunately, as the term is used more frequently, it is also used in

disparate and often vague ways.

The Center for Advancing Health (CFAH) defines engagement as “actions people

take for their health and to benefit from health care.” (Gruman, 2013). Jessie Gruman,

President of CFAH, notes that not all actions taken by patients fall into the CFAH definition;

many do not clearly lead to maximizing benefits from care. CFAH has identified over 40

specific “engagement behaviors” (Holmes Rovner, M., French, M., Sofaer, S., Shaller, D.,

Prager, D., and Kanouse, D. 2010) and has examined existing data to get a sense of how

prevalent different behaviors are in the population (Center for Advancing Health 2011).

A “patient-centered” view of patient engagement requires that it will only happen if

health professionals, organizations and policies (1) create clear opportunities for

engagement; (2) make it clear that they welcome engagement; and (3) provide the support

that people need to engage (Carman, Dardess, Maurer, Sofaer, Adams, Bechtel and

Sweeney, 2013). Patient-centered views of engagement require nurses to hear and

understand the values, preferences, cultural context, potential contributions, practical


circumstances and unique health profiles of individual patients that are core to patient-

centered care and patients as decision-makers regarding their own care. This involves

listening to patients, not assuming that because of our role as health professionals we

understand their needs better than they do themselves. It means using techniques such

as motivational interviewing (Apodaca and Longsbaugh, 2009), shared decision-making

and customized educational experiences instead of passive patient education. Most

importantly, it requires that nurses and others view consumers of health care as competent

in making decisions about their own health and health care, given the opportunity to

become well-informed and supported in making those decisions. This White Paper does

not support the common use of the term “engagement” that makes it synonymous with

“adherence” or “compliance.” Adherence and compliance imply that patients are said to be

engaged when they do what physicians, nurses and other clinicians, public health

educators, health care managers, health plans, employers and others want them to do.

Fostering successful engagement goes beyond information exchange to include

skill- and capacity-building on the one hand, and embracing the engagement of patients on

the other. Some patients and family members are pioneers--that is, they may be proactive

even if no one encourages them--but most are not. Many patients who are ready to

engage believe that they will engage at their peril, that clinicians and others will react

negatively if they ask probing questions, disagree, suggest an alternative approach, ask for

a second opinion, question an insurance company decision, or indicate dissatisfaction

(Frosch, May, Rendle, Tietbohl and Elwyn, 2012). As already identified, some patients or

families trying to engage by pointing out to a nurse an error in the making, experience

having their concerns dismissed and the error in fact occurs. Consumers make it clear

that in terms of their experience of care in a hospital at least, the domains of greatest

importance to them are communication with nurses and communication with doctors

(Sofaer, Crofton, Goldstein, Hoy and Crabb, 2005).

The work of Hibbard and colleagues (e.g. Hibbard, 2008, Hibbard and Mahoney,

2009) regarding “patient activation” represents a different approach to defining and


fostering patient engagement. Their tool, the Patient Activation Measure (PAM), helps

nurses and other clinicians learn where individuals are at the outset of an attempt to

educate, inform or seek health-related decisions or action. Interventions can then be

designed to meet the individual anywhere along that continuum of patient activation.

Hibbard, Greene and others believe that patient activation is the underlying trait measured

by the PAM. They believe this trait, which encompasses one’s skill, knowledge and

confidence to manage health and health care, leads to engagement behaviors. Their

research with outpatients found these engagement behaviors lead to positive health

behavior changes and health outcomes (Hibbard and Greene, 2013). They found that the

least activated individuals are less likely to engage in healthy behaviors. They also found

that interventions that ask the least activated to do small steps that are feasible are more

likely to be successful. If so, interventions that assume less activated individuals will make

huge leaps from current behavior or begin to absorb large quantities of information quickly,

will likely fail and could reinforce previous failures. Hibbard and her colleagues

recommend starting small by identifying a behavior change that is perceived and

experienced as doable by the person in question. Providing tools and support for that

small step moves people along the activation scale and provides an experience of

success. This approach creates a foundation on which the next step can be built until a

repetitive pattern of success builds greater capacity and patient self-confidence.

Engagement interventions that ask too much of some individuals can actually

increase the disparities between those who are more ready to engage and those who are

not. All too often, the individuals less ready include those already vulnerable in other ways

because of poor health or functional status, level of education and knowledge, financial

resources and a host of other factors.

Another consideration in defining engagement revolves around who is engaging.

In some cases an individual patient is unable to be actively engaged due to frail health,

cognitive impairment or other problems. The capacity to engage may be challenged by

mental health issues or language barriers, yet those are not reasons to deny patients and


families the opportunity to share in the decision making. An individual’s capacity to engage

may also change during the passage of various stages of an illness. It is not ethically

acceptable to decide that these patients can never be engaged meaningfully and that

professionals have to do the decision-making for them (Hansen, 2012; Mayo and

Wallhagen, 2009; Volpe, 2010). When individuals cannot themselves engage, their only

recourse is with or through trusted family members and loved ones who stand by them.

Embracing engagement means inclusion of not only patients themselves, but also others

who patients indicate are empowered, formally or informally, to act on their behalf. The

one important requirement is that patients identify who can act and speak on their behalf.

The Code of Ethics for Nurses supports that when an individual has no one they trust, the

nurse’s obligation is to recognize and acknowledge this gap, and then consciously align

with the patient as the individual’s staunchest advocate (American Nurses Association,

2001).

B. The Logic Model for Developing and Achieving Outcomes of Patient Engagement

This White Paper incorporates a logic model depicting the development and

outcomes of patient engagement, constructed with the assistance of Hibbard, Greene,

Gruman and other participants of the Expert Panel (Figure One). Figure One identifies

various strategies to foster greater engagement of consumers. It presumes that health

professionals embrace and ensure that individuals are central to all decision-making. It

stipulates that individuals become increasingly well-informed about health and healthcare

choices and consequences, whatever that requires, in order to make sound decisions. The

patient’s current level of engagement, including confidence and capacity to engage, is

measured initially by looking at the individual’s level of activation (engagement) via his/her

PAM score. Based on the level of activation, further strategies and interventions are

designed to foster greater success and confidence over time (increased engagement).

Behaviors that suggest engagement and in the long term lead to better health and health

care decision-making are identified. The outcomes of highly engaged and confident patient

decision-makers include changes in health behavior, health status, functional status and


the patient’s experience of care; in some cases, it also leads to greater efficiency, reduced

overuse of health care resources and lower cost.

FIGURE 1: DEVELOPMENT AND OUTCOMES OF PATIENT ENGAGEMENT

C. Acquiring Patient Engagement Behaviors and Shared Decision-making Skills

Most individuals experience health care in the local community using individual

primary care providers. Ideal opportunities for patients and providers to learn and

experience patient engagement and shared decision-making, whether as a nurse or as a

consumer of health care, can be found in community settings, particularly in primary care

environments and outpatient clinics. Once a patient is hospitalized, the acuteness of a

situation may not lend itself to learning these skills. If individuals and families experience

success and reassurance that providers will keep them safe as they take on more of this

responsibility, they will risk greater decision-making and shared accountability. As

engaged consumers patients will also learn to expect the primary care environment to be

supportive of their engagement; they will begin to expect it across other settings as well.

The place to start treating engagement as normative and expected is from birth.


Parents are often most readily engaged when protective of their child’s health. Preschool,

school age and adolescent children alike are fascinated by blood pressure cuffs,

stethoscopes and what they measure. College health centers maximize this opportunity to

continue the learning trajectory; they focus their strategies on college students’ self-care

management, healthy eating and exercise, stress reduction and promotion of mental

health, injury prevention, safe sex and avoidance of substance abuse. Middle aged and

older adults who are struggling to manage chronic diseases have increased motivation to

develop patient engagement and shared decision making skills, while the elderly often

have specific end-of-life expectations and preferences. These groups could gain skills and

confidence in community programs that provide coaching and reassurance, and through

enhanced communication between provider and patient in primary care practices.

IV. A MODEL FOR ENHANCING THE CONTRIBUTIONS OF NURSES TO FOSTERING SUCCESSFUL ENGAGEMENT

A. Achievement of Conditions by Nurses that will Foster Successful Engagement

For nurses to foster individual patient engagement in health and health care

successfully, several conditions must be realized: (1) Nurses must practice a fully patient-

centered approach to health care delivery; (2) Nurses must embrace and support fully the

belief that patients and families are or can become competent to engage fully in making

informed decisions about their own health and health care; and (3) Nurses must be willing

to fully support patients as they encounter obstacles in the health care system. This can

occur through one-on-one advocacy on behalf of patients to keep them safe from harm, by

fostering shared decision-making to ensure the patient’s preferences, values and beliefs

are supported appropriately, or by demonstrating leadership within and externally to bring

about increased responsiveness of the system to engaged patient/family decision making.

Achieving these three conditions requires that nurses may need to change their own

practice behaviors; that nurses will likely need to influence change in the behaviors of

others; and that nurses must be willing to step forward to sway other health professionals,


health care workers, and policies within their own work environments. In these efforts they

will be changing the way that nurses and others interact with patients and families.

B. Logic Model for Fostering Successful Engagement

In Figure One, a “logic model” was presented depicting the development and

outcomes of patient engagement. Figure Two presents a “logic model” for the Strategic

Plan that will maximize the contribution of nurses in fostering patient and family

engagement successfully.

FIGURE 2: MAXIMIZING THE CONTRIBUTIONS OF NURSES TO PATIENT ENGAGEMENT:

A LOGIC MODEL

Figure Two represents the strategies and tactics needed by the profession for all


nurses to achieve the three conditions cited at the beginning of this section. It identifies the

increased understanding by nurses of the importance of the patient as the center of health

care decision-making, required to achieve these conditions. Increased commitment to the

patient’s importance can lead to changes in behaviors of nurses where needed. The

Figure further identifies the proximate, then intermediate and finally longer-term outcomes

of the changes in values and behaviors which will be visible not only among nurses, but

also among patients, within health care delivery systems and through the population as a

whole.

Strategies to affect these values and changes in behavior are recommended in the

following domains, including:

• Ensuring that all nursing education emphasizes patient engagement

• Amplifying the professional standing of nurses as champions of patient engagement

• Strengthening support for nurses as advocates in the care environment of patients

• Aligning incentives to encourage patient engagement

• Enforcing regulatory expectations and standards that support patient engagement

principles in practice

• Intensifying efforts to conduct and disseminate research on patient engagement

These six strategies leveraged at the national level as well as locally, according to

the model, will lead to increased understanding by nurses of their roles and responsibilities

in fostering engagement. More specifically, the strategies lay out examples of the kinds of

changes in values and behaviors needing to occur among nurses at the front lines, in

communities, for those in managerial roles, and for those in executive, leadership and

policy positions. The strategies and the changes in values and behaviors require that

nurses embrace their responsibility to make it is easy and beneficial for patients and

family members to engage, to share in decision-making, to take actions that positively

impact their own health and to gain the benefits of short and long term positive health

outcomes. Changes in outcomes reflect what can happen for nurses, patients, and society

as a whole when engagement is expected, supported, and widely accepted.


V. FROM MODEL TO ROADMAP: BUILDING A STRATEGIC PLAN TO MAXIMIZE NURSING’S CONTRIBUTION TO PATIENT ENGAGEMENT

While the logic model illuminates a pathway to achieving positive health outcomes

for patients, the nursing profession faces the challenge of agreeing on and committing to

the specific domain strategies and tactics for raising its own capacity to consistently foster

engagement successfully. A national collaborative effort will be required to accomplish the

level of capacity building needed for nurses to consistently provide support for patient

engagement across all settings and populations. Nursing organizations and other

stakeholders will determine the methods for amassing the resources and efforts to address

those strategies. The following list represents the range of opportunities in each domain

and certain essential steps to achieving them.

A. Ensuring that all nursing education emphasizes patient engagement

To maximize the positive impact of nurses on patient engagement, not only students but all

faculty, practicing nurses and advance practice registered nurses (APRNS), nurse

administrators and nurse leaders require education consistent with the principles of patient

engagement cited at the beginning of this White Paper. This can be accomplished through

the following:

• Implementation of a process for identification and inclusion of nursing competencies

required for effective patient engagement in standards setting documents such as

Nursing: Scopes and Standards of Practice (ANA, 2010), Accreditation standards,

Baccalaureate, Masters and DNP Essentials, and NCLEX examination blueprints.

• Development of educational curricula, materials, simulation activities and tools that

support the faculty development in the teaching and demonstration of competencies

(i.e. QSEN Model)

• Identification and replication of best practices for the ongoing education of practicing

nurses in acute, long term and community settings regarding values, principles, and

techniques that foster successful patient engagement such as the PAM, shared


decision-making, patient coaching, motivational interviewing

• Inclusion of health care consumers such as patient advisors who will provide

perspectives on how nurses could be more effective in fostering engagement than

what is currently being practiced

• Development of high-level programs for nurse managers, senior nurse leaders and

other executives that create work environments that support nurses and patients to

fully engage in every encounter with the health care team in activities such as

shared decision-making and advocacy

• Identification and implementation of best practices and other approaches to engage

APRNs providing primary care services in employing effective skills such as

motivational interviewing, shared decision-making and others that foster successful

patient engagement

B. Amplifying the professional standing of nurses as champions for patient engagement

Although nurses are deemed the most trusted professionals, in many situations

nurses’ concerns have not been treated with respect, even when patients’ lives have been

at risk. Further, the public and other health care team members may lack understanding of

the knowledge and skills nurses possess, resulting in an undervaluing of the nurse’s role.

Even though patient-centered care and patient engagement are central to nursing theory

and practice, for nurses to foster successful engagement effectively, nurses must often

challenge other health professionals directly, requiring nurses to be viewed as fully

credible as they exert their influence in the work environment on behalf of patients,

families, and communities. Key steps to achieving greater professional standing include:

• National and local messaging campaigns to the public and key healthcare

stakeholders that communicate:

o skills and value of nurses as independent professionals who collaborate with

patients and family members, complete and document in-depth assessments


and develop, implement and refine plans of care

o skills of nurses in the use of medical knowledge and information technology

o breadth and depth of nurses’ clinical and managerial education and

knowledge

o nurses’ increasingly highly sophisticated levels of education and capacity to

conduct breakthrough research

o value of nurses’ expertise in strategic planning and policy making

• Expansion of existing and new leadership programs that prepare nurses to function

at a wide range of decision-making “tables” in policy, quality, measurement, health

services finance and research

o Increases in the numbers of nurses holding executive and board-level

positions in a wide variety of health care organizations

C. Strengthening support for nurses as advocates in the care environments of patients

Patients will only be successful in taking greater responsibility for their health care

decisions and actions if they are well-nurtured in this process, consistently protected from

making profoundly negative decisions along the way, and kept safe. Nurses and other

health professionals will effectively fulfill this nurturing role if they are likewise developed

and visibly and consistently supported by their employers and work environments. Nurses

must feel safe in taking on strong advocacy roles and in challenging others who might

perceive themselves in stronger power positions. RN Satisfaction Surveys ask nurses

about the working relationship among the physicians and nurses in the health care

setting, seeking to determine the impact of positive relationships to the safety of patients

(American Nurses Association, 2007). A recent New York Times piece showcased one

nurse’s view of how this relationship affects the safety net that RNs provide for patients

(Brown, 2013). The necessary ongoing support for nurses to foster patient engagement

effectively in care and decision-making is more likely to occur through work environments,

regardless of setting, that:


• Align the organizational mission and vision with patient-centered care broadly,

and create a supportive work environment that holds all health care workers and

professionals accountable for fostering patient engagement specifically. This

requires that organizations recognize both the inherent and the instrumental

value of patient engagement

• Commit organizationally to and concretely reflect patient engagement in a

variety of practices, including job descriptions, hiring and promotion criteria and

personnel evaluations; initial training and orientation of all new employees, not

just nurses; ongoing education of health professionals, and sufficient nurse

staffing based on Safe Staffing Principles already articulated by the American

Nurses Association (ANA, 2012).

• Actively and regularly monitor the work environment through administration of

validated instruments such as the Practice Environment Scale, the Nursing Work

Index, and nationally recognized RN satisfactions surveys

• Employ instruments that measure commitment to patient engagement in

organizational cultures such as the Hospital Survey on Patient Safety Culture

(AHRQ, 2004) and the active involvement of patients and family members in key

decision making groups, quality improvement teams and professional

development activities

• Utilize opportunities such as the Magnet Recognition Program of the American

Nurses’ Credentialing Center, a formal program that evaluates work

environments of nurses, to incorporate in its criteria, explicit attention to

demonstrated effective patient engagement

D. Aligning incentives to encourage patient engagement

Tactics that incentivize health systems and nurses to value the competence of the

patient and family in shared decision-making and actions that improve health need not rely

entirely on altruism as a motivating force. Monetary considerations can be leveraged as


well. The following have the potential to positively impact behaviors that lead to better

outcomes for patients:

• Advocacy for inclusion of specific language requiring demonstrated evidence of

effective patient engagement in the Centers for Medicare and Medicaid Services

“conditions of participation” for any organization seeking reimbursement for

services to Medicare beneficiaries

• Recognition and weighting of tasks and interventions that foster successful

patient engagement, such as shared decision-making, health coaching,

motivational interviewing and others, in patient acuity and workload systems

• Recognition of the importance of the above tasks and interventions in criteria

that recognize nurses in clinical ladders and promotion

• Financial recognition that supports primary care practices as the ideal setting in

which to create success for providers and patients who engage in shared

decision-making, motivational interviewing and other tactics. More patients

experience health care in communities and via their primary care providers than

in institutional settings. If patients experience and learn to expect the primary

care environment to be supportive of their engagement, they will begin to expect

it across other settings as well.

• Renewed efforts to fund and capture data showing the efficacy of nurse-

managed health centers in improving the outcomes of care through patient

activation and engagement

E. Enforcing regulatory expectations and standards that support patient engagement principles in practice

Health care is a highly regulated industry. National, state and local organizations all

bear some level of responsibility for setting and enforcing minimum standards and

requirements intended to protect consumers, employers, insurers, providers and others.

Some are voluntary; many determine levels of payment for goods and services. Others


determine who may be permitted to practice and the scope of that practice. Tactics such

as those below can support institutionalization of patient engagement principles and

practices. Nursing will seek to:

• Leverage the power of key accreditors such as Joint Commission (TJC), the

National Committee for Quality Assurance (NCQA) and URAC by including

criteria pertinent to the demonstration of effective patient engagement in

environments such as acute care hospitals, health care/medical homes,

ambulatory clinics, long term care facilities, and providers’ offices that can lead

to institutionalization of the principles and practices that ensure patient

engagement

• Collaborate with state boards of nursing to ensure that the Model Practice Act

and state Nurse Practice Acts enforce through licensure the expectation that

nurses will advocate for and support patients in shared decision-making and

other interventions to keep patients safe from harm due to preventable events

F. Intensifying efforts to conduct and disseminate research on patient engagement

Nursing research that adds to the body of knowledge regarding effective

interventions to support patient activation and engagement will be strengthened by:

• Initiation of a national research agenda seeking to identify interventions that

produce patient activation, support well-informed health care decision-making by

patients and families and identify effectives tools for increasing nurses’ skills and

behaviors that foster successful engagement

• Encouragement of the Patient Centered Outcomes Research Institute to include

funding for research that enhances nursing’s understanding of the conditions,

barriers and effective interventions that contribute to patient activation and

engagement across different patient populations and settings of care

• Identification of existing measures and development of new measures that describe

variations in nurses’ attitudes and beliefs about patient engagement; nurses’


confidence in their ability to be successful in fostering engagement as well as the

level of those skills; nurses’ assessments of the organizational and community

environment in which they work, in particular the extent to which it supports patient

engagement efforts; and the extent to which specific engagement strategies and

tools are being implemented, both in care delivery settings, in organizational

settings, and in policy-making settings

• Engagement with other disciplines to determine appropriate measures of outcomes

of effective engagement and shared decision-making

• Success in gaining other sources of funding that will support nurses to conduct

translational research focused on educating nurses and other health professionals

in creating provider patient relationships, and other conditions that foster and

support patient engagement

VI. CLOSING THE DEAL

Nurses serve many functions across virtually every health care setting including the

community, and from primary care to tertiary care. Nurses work directly with patients and

families; they also have pivotal positions coordinating the work of multiple health care

disciplines, monitoring and driving quality improvement and in setting overall strategy and

policy. Nurses are experts in assessment, planning and coordinating care in and across

the settings of care, anticipating, monitoring and responding to changing conditions that

necessitate modifications in plans of care and care processes. Nurses are critical to the

exchange of information with patients, families and other members of the health care

team. Their sensitivity and respect for the diversity of culture, race, ethnicity, and sexual

orientation is demonstrated by their well-honed communication skills, their customized

planning and evaluation of care, and use of technology. Nurses have been taught to be

the patient’s advocate and to exert leadership within the clinical unit, across various

settings of care and at the organizational level and beyond. Nurses also operate in the


worlds of education, research, regulation, business and policy.

The cross-cutting roles played by nurses across most settings provide the

profession the strategic leverage not only to change nurses’ own practices, but to also

transform health care delivery in the direction of patient engagement and patient centered

care. Nursing takes on tremendous responsibility within the health care environment on

behalf of patients. Yet nursing must become even more focused on the patient and family

as the center of the world in which health and health care are provided.

This White Paper has described the empirical case for nursing as a profession and

for nurses as individuals, educators and leaders to commit to fostering and supporting all

consumers as they meet the challenges of making health and health care decisions.

Without consumers becoming effective and competent in these decisions, the consumer’s

capacity to take actions that affect their lives as well as those of the community in which

they live will continue to be compromised.

This White Paper has provided a high level strategic plan encompassing six

domains. Tactics have been identified that can move this strategic plan to fruition if nursing

organizations and nurses that represent every patient care setting and every population

provide a strong, united commitment to the strategic plan. The need for unity of effort

cannot be overstated in advancing this transformational work.


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ATTRIBUTIONS and ACKNOWLEDGEMENTS Funding for this White Paper was made possible [in part] by grant 1R13 HS21600-01 from the Agency for Healthcare Research and Quality (AHRQ). The views expressed in written publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government. This grant was obtained on behalf of the Nursing Alliance for Quality Care by the George Washington University School of Nursing’s Dr. Mary Jean Schumann, DNP, RN, CPNP, FAAN, NAQC Executive Director, and Dr. Nancy L. Falk, PhD, MBA, RN, co-principal investigators. Special thanks go to the collaborative efforts of George Washington University School of Nursing Dean Jean Johnson, PhD, RN, FAAN, faculty member Dr. Kim Acquaviva, PhD, and doctoral students Regina Hymer, MSN, RN and Kathy Phillips, MSN, RN for their participation in the preparation of the proposal. This White Paper was commissioned by the Nursing Alliance for Quality Care and prepared by Dr. Shoshanna Sofaer, Dr.P.H. and Dr. Mary Jean Schumann, DNP, MBA, RN, CPNP, FAAN. Special recognition goes to the Nursing Alliance for Quality Care (NAQC) organizations and their representatives who supported this work, contributed to its contents and gave final approval. NAQC Board of Directors: Geraldine (Polly) Bednash, PhD, RN, FAAN Chief Executive Officer and Executive Director American Association of Colleges of Nursing Gerri Lamb, PhD, RN, FAAN American Academy of Nursing Penny Kaye Jensen, DNP, APRN, FNP-C, FAANP Past President American Association of Nurse Practitioners Beverly Malone, PhD, RN, FAAN Chief Executive Officer National League for Nursing Marla J Weston, PhD, RN Chief Executive Officer American Nurses Association Pamela A. Thompson, MS, RN, FAAN Chief Executive Officer American Organization of Nurse Executives

Kathy Apple, MS, RN, FAAN Chief Executive Officer National Council of State Boards of Nursing Joanne M. Pohl, PhD, ANP-BC, FAAN, FAANP National Organization of Nurse Practitioner Faculties Lynn Johnson, PhD-C, CNM, OGNP, RN American College of Nurse Midwives Linda Groah, RN, MS, CNOR, NEA-BC, FAAN Executive Director Association of periOperative Registered Nurses Peg Harrison, MS, RN, CPNP Executive Director Institute for Pediatric Nursing (IPN)


Helen Haskell, MA Founder Mothers Against Medical Errors Joyce Dubow Senior Director, Health Care Reform AARP Office of Policy and Strategy Tom Valuck, MD, JD Senior Vice President, Strategic Partnerships

Jeannie Miller, MPH, RN Deputy Director, Clinical Standards Group CMS/CCSQ/CSG Jim Padilla, JD Associate Professor Tiffin University

National Quality Forum At-Large NAQC Member Organizations:

• Academy of Medical Surgical Nurses • Association of Nurses in AIDS Care • Association of Rehabilitation Nurses • American Academy of Ambulatory Care Nursing • Hospice and Palliative Care Nurses Association • Infusion Nurses Society • National Association of Clinical Nurse Specialists • National Association of Orthopedic Nurses • National Gerontological Nursing Association • Nurse-Family Partnership

NAQC Program Coordinator Mina Shyu


We acknowledge the significant contributions of the Expert Panel who devoted their expertise and time to reflect on nursing’s contribution to successful patient and family engagement. Expert Panel Members: Alexis Bakos, PhD, MPH, RN Deputy Director, Division of Nursing Bureau of Health Professions Health Resources and Services Administration Catherine Besthoff, RN, MHA, CPHQ Director of Program Evaluation Krasnoff Quality Management Institute Shirley Brekken, MS, RN Executive Director, Minnesota Board of Nursing Vice President, NCSBN Board of Directors Kathy Calzone, PhD, RN, APNG, FAAN Senior Nurse Specialist National Cancer Institute, NIH Joyce Dubow Senior Director, Health Care Reform AARP Office of Policy and Strategy Nancy Falk, PhD, MBA, RN Assistant Professor George Washington University School of Nursing Jessica Greene, PhD Director of Research George Washington University School of Nursing Jessie Gruman, PhD President Center for Advancing Health Helen Haskell, MA Founder Mothers Against Medical Error

Judith Hibbard, DrPH Professor of Health Policy Department of Planning, Public Policy and Management University of Oregon Michelle Lucatorto, DNP, FNP-BC Clinical Program Manager, Specialty Care Office of Nursing Services Molly Mettler, MSW Senior Vice President Healthwise Luc R. Pelletier, MSN, PMHCNS-BC, FAAN Administrative Liaison Sharp Mesa Vista Hospital Mary Jean Schumann, DNP, MBA, RN, CPNP, FAAN NAQC Executive Director George Washington University School of Nursing Shoshanna Sofaer, MPH, DrPH Professor of Health Care Policy School of Public Affairs, Baruch College Pamela A. Thompson, MS, RN, FAAN Chief Executive Officer American Organization of Nurse Executives Barbara Todd, DNP, CRNP, APRN-BC University of Pennsylvania Hospital Stephanie Wright, PhD, FNP-BC, PNP-BC Associate Dean, Interim School of Nursing

We acknowledge the contributions of Conference* speakers and participants who provided feedback about the White Paper during the Conference Listening Sessions. We extend a special thank you to the Co-leaders of the Listening Sessions, Joanne M.Pohl, PhD, ANP-BC, FAAN, FAANP and Shoshanna Sofaer, Dr.P.H. and to Mina Shyu, NAQC Program Coordinator, whose many contributions made this conference run smoothly. *Nursing Alliance for Quality Care National Consensus Conference on Nursing’s Contributions to Fostering Successful Patient Engagement November 12-13, 2013.

Conference* Speakers :

Bob Blancato Natasha Bonhomme Kathy Calzone Jim Conway Nancy Falk Mary Ann Friesen Rosemary Gibson Susan Grant Jessica Greene Helen Haskell Judith Hibbard Jean Johnson

Don Kemper Beverly Lunsford Ben Moulton Kim Nazi Jim Padilla Kathleen Painter Marguerite Russo Mary Jean Schumann Lawrence Morrissey Ashley Umbreit Sharran Nickie Burney Catherine House

Kimberly Foley Mary Ann Friesen Taryn Hogan Teresa Jerofke Jeanne Kenney Aurora Ocampo Ushma Patel Kimberly Propert Mani Rajamarthandan Janice Schuld Karen Speroni

Conference* Participants: Sarah Abey Kimberly Acquaviva

Lindsay Ahearn Carmen Alvarez

Kim Antonelli Kate Asiedu


Jacquelyn Baker Francine Barr Jo-Ann Barrett Andrew Beazley Ginny Bliss Sharon Bostic Andrea Brasard Katie Brewer Deborah Carlson Lynn Carr Michelle Clausen E. Tearrah Cristiani-Nguyen Ann Crowder Teri Crutcher Maureen Dailey Sandra Davis Jeff Doucette Astoria Edwards Christi Elly Ann Evans Andrea Ewing-Thomas Jo-Ann Fiscina Denise Flook Hannah Freymeyer Peggy Frizzell

Ronna Halbgewachs Gene Harkless Regina Hymer Carrie Kairys Marie King Meagan Klein Sara Koslosky Lindsay Lang Mayri Leslie Allison Ludwig Kate Malliarakis Rebecca Mance Robin Marcus Stacey Marsh Dave Mason Marie Masuga Jonathan Miller Jean Montgomery Evangelina Montoya Jill O’Brien Eileen O’Grady Colleen O’Malley Bonnie Parker Arlene Pericak Rebecca Perz

Ashley Pho Bonita Pilon Joyce Pulcini Joyce Reid Kathleen Richardson Rebecca Rios Rebecca Ryan Lisa Sams Leola Saucier Bryson Schaeffer Christine Seaton Carol Silveira Chantel Skipper Billinda Tebbenhoff Monica Vidal Dory Walczak Joanne Welch Gretchen Wiersma Nicholas Willard Brittany Wilson Lara Wolf Erin Zimmer

authors: shoshanna sofaer, drph. mary jean schumann, dnp ...4aa949/globalassets/... · 8....

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